A lesson about true friends for those facing serious illnesses

I read that on a magnet on my friend’s refrigerator recently and the simple power of that saying brought me to tears. I have learned that lesson of true friends since my son’s diagnosis of cancer in 2007.

Anyone who has faced a serious illness as a patient or a caregiver knows that you quickly learn who your friends are. They are the ones who are there, who listen instead of trying to fix things, who are present for you in any way you need them. Some people you love will disappoint and not rise to the occasion, and some people you never expected will be your biggest supporters.

It is hard not to resent people who are there in the crisis, and then leave once the immediate crisis is over. There are people who are not there for the long haul, for the good and the bad that a disease may bring. The initial drama draws everyone in, but sends them running afterward.

I have learned, especially when you are living a nightmare, that it takes a special person to stay with you throughout the crisis. A person who keeps checking in and knows the journey is not necessarily over once you are in remission, or when your loved one has passed away. When my son Mason had brain cancer, our family found our true friends. We were surprised by many who walked out, but also by how many true friends walked into our lives because of Mason’s illness. We have learned even after Mason’s death, even three years later, we continue to go through this process of discovering our true friends.

Some people are not capable of handling personal difficulties. We, as patients and caregivers, need to understand not everyone has the capacity or tools to handle a crisis of another. This knowledge does not make it any easier for us as we wade through process of dealing with disease. As a director at Inspire, a company that creates and manages online patient support communities, I see regularly the comments of patients and caregivers who talk about friendships won and lost since diagnosis. Some are surprised and profoundly saddened by the lack of support from those expected to help the most. However, many happily note those friends, family, and even strangers who surprise them with support in a time of great need.

I recall reading about a Florida woman, whose teenage son was undergoing chemo, wrote that her friends avoided her upon learning about her son’s cancer diagnosis. “It’s almost like they were afraid they could catch it,” she said.

Another, a bladder cancer survivor from New Jersey, observed, “A lot of people walk out. . . a good 50% of my ‘pre-cancer’ friends I have never heard from again.” He went on to say, “In my case, I am lucky. I have all strong ones, having cut weak relations a long time ago. I keep only the cream of the crop.”

Sometimes finding others who are dealing with the same issues can be the most helpful strategy. You can often talk online more frankly and honestly with them than with some loved ones or friends. Dealing with an illness can be a lonely and scary process. Participating in support communities often help alleviate some of that loneliness. I have seen repeatedly how these connections are a powerful tool and establish strong personal friendships among members.

If you’re a patient or caregiver, look for the people who are true friends and hold those people close. Craft a strong support network–both in person and online. If you have a chance to do so, be the kind of true friend people are often searching for in their lives when they need it the most.

Danielle Leach is Director of Partnerships at Inspire and is founder of the Mason Leach Superstar Fund, in memory of her son, Mason, who died of pediatric medulloblastoma in 2007.

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A lesson about true friends for those facing serious illnesses 10 comments

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http://secondbasedispatch.com Jackie Fox

Well said and so true. People are so afraid of saying or doing the wrong thing. You don’t have to say or do anything. All you have to do is be there. And a simple “How is he/she?” and “How are YOU?” can work wonders.

JSimons

Having been a cancer survivor 3 time i have over that same period seen a lot of my so called friends walk away. I now have several true friends and lots of aqquaitences.

http://www.practitionersolutions.com Niamh van Meines

Danielle,
Here is what I have learned about people from working with hospice and cancer patients for a number of years:

We often resent the people / family / caregivers that we expect should be there in the moments of need but are MIA. I have thought and said the worst things to family members because of the judgments I made, until I figured out why. Here’s how their behavior can be justified:
— Their coping style is to bolt, disappear, get busy with other things and distract themselves from having to deal with the overwhelming reality of the situation. Denial is a great coping style until it can no longer be sustained.
— These people absolutely love and care about the person with the illness but are useless in the managing of the crisis. To reap any benefit, and keep them engaged, they need clear and concise instructions and easy / mindless tasks (which won’t freak them out) and much reassurance and appreciation. Still, they often end up making the issue about themselves (the stress they feel, the pain and trauma) which detracts the attention from the ill person. So it’s fine that they are caring and concerned quietly from afar.
— Forgiving them for not having the coping skills reduces the isolated and lonely feeling for the sick person. They haven’t been abandoned.
— Compassion fatigue also plays a role. Sometimes the caregivers are burnt out from caring, worrying and doing things for the ill person that they run out of energy and resources to give and care anymore. They should then be afforded the opportunity to refill their stores so they can give again. It’s not always natural for people to sacrifice their time and energy to care for the sick and for the self absorbed types (we all know who they are!) they have to have time for themselves, period.
— Some people are givers and some are takers. Some people reap the benefit by saving the day (a characteristic of hospice and palliative care workers and emergency responders). Just observing and knowing how people operate will tell you whether they have the capacity to be present in a crisis and how they can help.
— Issues of control play a part also: If you live your life in a very organized, regimented manner, as soon as the out of control illness rears it’s head, and life plans go awry, the controlling person spends all his / her time trying to get control over everything again. That can also be a painful experience for everyone.
–And finally, the sick person’s needs change with the presence of an illness. These needs are not always understood by those around them. Looking to family / friends who do not have the skills to fulfill the needs is setting oneself up for failure and disappointment. Why add that to the already heavy burden of the illness? It’s a difficult task however to be sick and feel a host of different and upsetting feelings about being ill and about those that we think should care.

Well said and explained!
Having been a caregiver to my son who had a brain tumor. and then a year and a half later having to go through it again, but this time it was me who had a brain tumor, I know all too well how different people play their roles in these situations.
Not everyone is ‘able’ to care the way the person who needs caring for needs it done, and we shouldn’t expect them to. I think these people can and do play a different role in our lives, just not as what we would call a ‘caregiver’.
Love is an action word to me. It something you do; not a feeling so much. I can love soemone to pieces from afar, but until you show them your love, by DOING for them , the way they need to be shown love, it isn’t a gift given yet.

Caregiving is difficult, especially for the long haul.
We have to remember as well, that others have their own issues and things they are dealing with, that we don’t always know about. I feel its best , and have learned over time, to just forgive them for not living up to my expectations. I do not ( or try very hrd not to) walk around with feelings of anger because it only undermines the work I have to do in my own life with the people I love and care about-it takes away from ME more than it does anything to them…
Anyway- its hard when you are the one needing help or assistance. You feel like YOU shouldn’t have to be psycho-analyzing why everyone else is or isn’t doing certain things! Its exhausting! Don’t go there!

http://msrenegade.com Marie

First, Danielle, I am so sorry for your loss. And cheers to those of you who have struggled with illness and triumphed!

I learned about true friendship when my husband died, leaving me, at 39, with four young children. My friends rallied around me, helped me find reasonable household help, made us meals for months, kept in touch. My family? Parents, siblings, aunts, uncles…not so much as a cup of tea. After much dramatic mourning at the funeral, no one in my family ever did anything for me or my children.

Fast forward 11 years. I am diagnosed with multiple sclerosis. Once again, it is my friends who surround me with love and support. My friends are the ones who lug my wheelchair around so I can get out and go places. My friends are the ones who call and offer help and encouragement. My family? Half of them don’t even speak to me any more.

It can be difficult to deal with the unknown, with sadness, with scary facts. Our culture does not handle those things well and we usually do not learn those skills growing up. But they can be learned. People need to use common sense and simple kindness when dealing with friends in crisis. A response does not have to be perfect. Just being there, just making yourself available, goes such a long way.

Your article really resonates with the Preemie community, I assure you. So many parents describe the change in their “Address Book” of family and friends during the preemie’s stay in the NICU and even after they go home. A preemie’s journey is not for the faint of heart, like so many people suffering from so many illnesses on the Inspire board. Parents come away from the experience with a strong urge to help others because they were left so impotent, so alone during their own trial. They never – ever, want another family to go through that type of pain.

Respectfully,
Deb Discenza
Co-Author of “The Preemie Parent’s Survival Guide to the NICU”
Co-Founder of Preemieworld (www.PreemieWorld.com)
Founder & former Publisher of Preemie Magazine
Moderator of Inspire Preemie Support Group

http://www.popusa.org POPusa

I felt alone when I was only married for 6 months and was diagnosed with cancer. I have been married for 14+ years and I still don’t know why he puts up with me. LOL On a serious note, I did not care about my cancer, heart failure, or any of the other health issues that I had in my life when my twin was only 10 days old and was near deaths doors. I have come to realize that angels are everywhere. They come right when we are starting to lean ourselves, from fatigue and prayer. People can be so cruel and we have to forgive them and just keep going. I am just blessed. I thank God for choosing me to be a preemie parent and I will live my life making it easier for all parents behind me. Thanks to all the wonderufl moms and dads who have carried my family. I am sure 90% were perfect strangers. Thanks Deb,Yamile,Sue,Lulu and so many others. Ordinary moms with hearts of gold.

I think “saying the right thing” can be a daunting challenge for many of our friends. Yes, even those longstanding good ones. I think that’s why people gush “You look great!” to sick friends. It has less to do with our fabulousness and far more to do with their relief that we may not look or sound quite as hideous as they may have feared, which would have made them extremely uncomfortable and awkward around us. They want and need us to be like our old selves again – and when we’re not, it can be simply too overwhelming or painful for many to handle well. Know that they are likely racked with guilt over their no-show behaviours.

After my heart attack, while I did appreciate kind-hearted friends and family who said: “Just call me if there’s anything at all that I can do for you!” – I knew that I was not going to call them to ask: ”Can you come over and change the kitty litter?” That was just never going to happen.

By comparison, I found it truly helpful when friends phoned and said something like: “I’m at the grocery store – what can I pick up for you while I’m here?” Other things I loved to hear are at “Ten Helpful Things To Say To A Sick Friend” at HEART SISTERS – http://myheartsisters.org/2010/01/19/sick-friend/

Finally, it’s extremely important that those living with a serious illness pick and choose carefully who to count on/confide in/trust. Save your very limited energy reserves to talk ONLY to those whose response will support you. Rather than scorekeeping the disappointing friends who are staying away, send them a thank you card, for those are the people whose visits would be so exhausting, you’d wish they’d have just stayed home.

And while you may be saddened by those who don’t show up, you may be equally delighted to find out who does! I continue to feel closer to many friends whose friendship is even stronger now than I believed it to be, pre-heart attack.

Ellen Michalowski

Danielle- My story is a big nothing compared to your loss and on-going pain, but your post hit home, nonetheless. After having a knee replacement that became infected, and then ignored by my surgeon, I became addicted to opiate pain meds. I eventually had a revision of the replacement and many weeks of IV antibiotics, but the Medical Board still felt it necessary to revoke my license, after 2 years clean and sober. I have lost and gained many friends, and the ones that stayed are worth their weight in gold. Peace to you and your family.

pj

Danielle- I don’t mean to sound insensitive, but please keep in mind, males in particular are “wired” to fix things, rather than listen.

Many of us don’t realize a listener rather than a problem solver, is all that a friend/relative needs, until we are told so. It worked for me!